Inflammatory bowel disease (IBD) is a life-changing diagnosis. Inflammation in the intestine, either centered in the large intestine, as in the case of ulcerative colitis, or in many areas along the digestive tract, as with Crohn’s disease, causes symptoms that are painful and cause physical discomfort and embarrassment. Those with irritable bowel disease often find themselves staying home, withdrawing from friends and family, and struggling with mood disorders like depression and anxiety. Family and friends can help patients with irritable bowel disease to better cope with their symptoms so that they can get out into the world and enjoy life. Here’s how.
As more people get comfortable talking about inflammatory bowel disease, more and more organizations are promoting education and awareness to help make this diagnosis less stressful and embarrassing.
If your loved one is diagnosed with IBD, knowing a few simple facts can help you to better understand what they are going through:
- Inflammatory bowel disease has a genetic component, but it is not 100% hereditary. It can be triggered by the environment, another illness (such as an autoimmune disorder), or a combination of all three.
- Symptoms vary widely but can include stomach pain and bloating, an uncontrollable urge to move the bowels, constipation, nausea/vomiting, and fatigue.
- Those with inflammatory bowel disease may go through a period of remission followed by a flare-up.
- There is no cure for this disease.
This is just the beginning of a wealth of information to help you learn about inflammatory bowel disease. Caring for someone with inflammatory bowel disease becomes much easier if you know what to expect.
Listen to your loved one
There is no getting around it: in the U.S., we don’t love to talk about bodily functions, especially about those concerning our bowels. With inflammatory bowel disease, there is really no way to avoid this discussion.
Your loved one may be reluctant to confide in you about symptoms or flare-ups because the subject is generally taboo. Let them know that you are available to listen to as much or as little as they have to say, whenever they are ready. If you are squeamish or uncomfortable, do what you can to mask those feelings while you are in conversation. It is hard enough to go through a chronic illness like this without a family member saying that it’s gross or makes them sick.
Try to put yourself in your loved one’s shoes and imagine how you would feel if you needed to talk and felt no one would listen, then proceed accordingly.
Accompany them to appointments
As with any chronic illness, a diagnosis of inflammatory bowel disease can be confusing, especially if it is unexpected or sudden. Patients who receive this type of diagnosis may be confused and unable to retain all of the new information they are receiving from their doctor, specialist, or clinician.
Offer to accompany your loved one to the doctor to take notes. This allows your loved one the time to ask questions and listen to the answers without having to really attend to every detail. This may also help if your loved one is seeing multiple doctors. A record of what each doctor has said or recommended can be a valuable tool when putting together a treatment plan.
Know where to go
This may just be the kindest, most loving thing you can do, and the easiest one to accomplish. Whenever you and your loved one go somewhere new, discreetly locate the restroom. You don’t need to tell them you have found it, but one of the most potentially embarrassing symptoms of inflammatory bowel disease is the urgent and uncontrollable need to move the bowels, a need that can strike suddenly. Often those with inflammatory bowel disease limit their activities to familiar places for just this reason. Help them get back to exploring and seeing new things by working on their behalf to locate the facilities wherever you are.
If you want to take this one step further, a change of clothes and appropriate hygiene items (e.g., wipes) can be stowed in your car for emergencies.
Work with your loved one to reduce stress
Stress can trigger a flare-up of inflammatory bowel disease. While a certain level of stress can be healthy to help deal with a crisis, a prolonged level of stress can be damaging on many different levels in the body.
Work with your loved one to find a stress-relieving activity that you can both enjoy. Yoga has many beneficial poses for stress relief and digestion, including a special type of guided meditation called yoga nidra. Mindfulness meditation has also been shown to relieve emotional and mental stress and can be extraordinarily helpful to handle depression or anxiety that can come with a chronic illness. Even a daily ritual of short walks in nature can help to relieve stress.
Take care of yourself
Helping a loved one deal with a chronic illness is a marathon, not a sprint. Caregivers often neglect their own needs while attending to the needs of their loved ones. It is important for caregivers to take time to care for themselves, whether that is through exercise, relaxation, or participating in activities they love.
Caregivers may feel guilty for leaving their loved one, especially if they are symptomatic, but as flight attendants always say before the plane takes off: it is important to put on your own oxygen mask before assisting others. Think of the care you give yourself as putting on your oxygen mask. This small time out will make you a better caregiver for the long haul.
Living with inflammatory bowel disease can be life-changing for both patient and caregiver. What has helped you cope with IBD as either a patient or a caregiver?